Questionnaire For Keeping Track Of M.E. Symptoms And Progress

[golden]

Has anyone come up with a decent system of keeping track of progress when trialling treatments?

I know most of the professional ones are seriously flawed.

For me , its the neurological challenges plus an actual fluctuating illness that leaves me perplexed.

I recall Hip raising this issue some time ago. Its an important point.

But a symptom diary is no good to me. I am going to give it a shot though ...

In a single day , important things to take into account :

* Time waking up / time going to sleep
* basal temperature am/pm
*blood pressure sitting standing
*room temperature
*hormonal cycle
*full moon cycle
*weather changes
*diet
*fluid
*any stress factors
*what can be physically achieved
*what can mentally be achieved

A score of 1-10 maybe....

I thought I made a leap in improvement.

Then I woke up to 'insanity ' a couple of mornings ago. Its an exercise advertisement programme... crikey ...
I know I definately cant do that!

But what exercise could i do to proove to myself I am definately improving? I wondered....

I have done a fair amount of chores...but this isnt really conclusive.

Any organisational thoughts anybody¿

 

[golden]

For example :

Mental improvement was ...

When the remote control of the TV dies...

I take the batteries out and give them a shake...put them back in and voila!

However In my recent improvement - It occurred to me to simply shake the remote control... voila !

Obviously I cant use this test again as I have worked it out.

I want to know how much my cognitive abilities are improving. I know I still have neurological neurological symptoms.
Tinnitus , some head blockage - need to not jump about ....
But I can cycle well.

 

[Seven7]

To be honest I have in my things to do to write myself an cel App just with CFS tracker, I need to spec it (things that needs to do and how) It is my next project!!! If anybody has suggestions of what they would like on it, I will start it. Not planning to charge for it (unless I need to pay somebody to help me, then I would spread cost).

 

[golden]

To be honest I have in my things to do to write myself an cel App just with CFS tracker, I need to spec it (things that needs to do and how) It is my next project!!! If anybody has suggestions of what they would like on it, I will start it. Not planning to charge for it (unless I need to pay somebody to help me, then I would spread cost).

i dont understand that technical stuff but i would be prepared to pay for it.


This is something i have never been very good at. At worst all i could say was 'i am tired' - Whilst I forfilled all the M.E. criteria - after
Now I have had a symptom picture change , I am at a loss.

I think being able to translate info into a graph also would be cool

 

[AbbyDear]

I would add pain level - min, max, avg (or maybe just max), generally 0-10, 10 being worse.

not sure how to measure brain function, memory, coordination, concentration.
not sure how to measure physical activity, i have to cook for myself, otherwise..., but just brushing teeth seems to be a real feat at times. For those who can walk, or do exercise (reps), maybe they can record distance, reps/sets/weight.

maybe:
1. number of times waken at night, how long took to fall asleep, approx total sleep time (may be challenging to know this), or could score sleep on scale 0-10.
2. fatigue level, or energy level
3. sleepiness level (i considered tired to be different than energy/fatigue/weakness)
4. mood
5. pulse rate sitting/standing, am/pm, before meal, after meal
6. body weight
7. SpO2 if have device
8. current Karnofsky score (though this not likely to change from day-to-day, also note here higher numbers are more functional unless scale is changed)
9. stress level

 

[Seven7]

Ok I am starting A list. I guess part of the set up can be how do you want to track Like sleep 1-10; Hours; Awakenings....

 

[SOC]

I've kept track of most of the things listed earlier in this thread at various points in my illness. I'm a very data-driven and graphical person, so I thought having hard data would help me. Most of the information I recorded didn't help much, though. The ones that I've stayed with because they seem to tell me the most about where I am and what I can do are BP on awakening and HR throughout the day. Interestingly, these are the ones that Dr Rey and Connie (Dr Sol) advised me to record, so I guess they know their stuff where I'm concerned. I also include a very rough description of my activity for the day, so that if I do crash I can check back and see if there's a correlation to activity level.

I've never had a good measure of cognitive function. My subjective assessments are often way off the mark, so that was useless. Also, cognitive function covers a lot of area and not all my cognitive functions were impaired, although some -- focus and memory -- were severely impaired at one point.

Another thing to keep in mind when using these measures to evaluate treatments is that very few treatments show a strong improvement in a short time. For example, antibiotics and antivirals can take months to show noticeable improvement. It's going to take a long time to trial all the treatments one at a time for several months each.

 

[Seven7]

The best sign I particularly for me to measure my physical state are stairs and how easy is to go up.
For BF my best measurement is how fast I think.
My neuro symptoms are easy for me to measure because I get pretty bad at depth perception and dropping things. The more I drop the worst I get.

 

[golden]

I would find recording external influences important and easy.
hormonal cycle, lunar cycle, temperature, weather, date ,
chemical exposure, lights

internal data:
body temp, weight, bp ,

diet
fluid

current protocol Eg. i do perrin technique each day...etc.

Here lies a problem because most of us are on multiple protocols...

second problem : when assessing eg.a supplement

a) it needs time
b) distinguishing side effects from a detox
c) distinguishing side effects from a natural worsening of M.E. that would have come anyway

Also a build up of drug/treatment /supplement may occur and cause delayed side effects

plus the complication of the delayed 24-48 hour PEM on top of which in the meantime other things will be being done - how on earth can you pinpoint for sure the isolating factor 48 hours ealier as a cause of PEM.

plus actually discovering that a balance of four or five things together works synergetically ...

its complicated.

Exercise - maybe better able to tolerate lying down or on a bicycle rather than being upright and bobbing the head about?


So would i cycle a distance x each day ? or every other day or whatever... see if i get fitter and can do it faster?

gague how easy it is to read a book? see if i have retained any info?

 

[Allyson]

I would find recording external influences important and easy.
hormonal cycle, lunar cycle, temperature, weather, date ,
chemical exposure, lights

internal data:
body temp, weight, bp ,

diet
fluid

current protocol Eg. i do perrin technique each day...etc.

Here lies a problem because most of us are on multiple protocols...

second problem : when assessing eg.a supplement

a) it needs time
b) distinguishing side effects from a detox
c) distinguishing side effects from a natural worsening of M.E. that would have come anyway

Also a build up of drug/treatment /supplement may occur and cause delayed side effects

plus the complication of the delayed 24-48 hour PEM on top of which in the meantime other things will be being done - how on earth can you pinpoint for sure the isolating factor 48 hours ealier as a cause of PEM.

plus actually discovering that a balance of four or five things together works synergetically ...

its complicated.

Exercise - maybe better able to tolerate lying down or on a bicycle rather than being upright and bobbing the head about?


So would i cycle a distance x each day ? or every other day or whatever... see if i get fitter and can do it faster?

gague how easy it is to read a book? see if i have retained any info?

Great idea to start this thread

not read all and racing out but I would include temperature - outside plus if you are inside heating or aircon used?

also compression clothing - if tht I swor it can make a difference in fluid levels

electrolyte intake - ditto

Cheers,

ALly